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Veteran struggles with constant pain

Veteran struggles with constant pain

Some push to have little-known debilitating syndrome given VA rating system code

Former Marine Kevin Shear, writhes in pain on Dec. 7 before he is taken to the hospital for intravenous medication. Shear, of Crystal Lake, suffers from complex regional pain syndrome. (Stacey Wescott, Chicago Tribune / December 7, 2010)

When Kevin Shear falls asleep, the pain barrels into his dreams, sometimes as an animal ravaging his right leg or shattered glass tearing at the limb.

The former Marine from Crystal Lake suffers from an unusual condition that attacks the central nervous system and leaves him in constant anguish, much like amputees who feel pain in their “phantom limb.”

The illness, complex regional pain syndrome, can cause lifelong medical nightmares for some adults and even children, usually after a mild trauma inflames the nerves, causing pain that never shuts off — even after the original injury heals.

Today, more veterans are complaining about the condition, which they believe derived from injuries suffered in the service — in Shear’s case, an ankle sprain during a training exercise. Because the malady isn’t formally recognized by the U.S. Department of Veterans Affairs, Shear and others say they find it difficult to get benefits from the government.

The veterans say they have lived in silence for too long and believe the military will see more of these cases as injured soldiers seek medical care. Although there is no way to know how many vets suffer from the pain syndrome, the number of appeals for disability compensation that cite the illness rose to nearly 600 in 2009, up from 330 in 2005, according to the Board of Veterans’ Appeals. The board lists about 500 cases related to the syndrome for 2010.

“It’s hard for people like us to mobilize,” said Shear, 34, who added that he has passed out from the burning pain and can no longer work or care for his 2-year-old son. “It’s hard to do anything. That’s why they call it the silent suffering.”

Shear has joined a campaign to raise public awareness and push for the VA to update its coded list of disabilities. An Air Force Reserve colonel suffering from the syndrome has led the charge in seeking compensation for hundreds of other military personnel returning from service. Many complain they have found little support from a federal agency already besieged with head injuries and post traumatic stresssyndrome.

The VA compensates veterans for injuries related to complex regional pain syndrome, said Thomas Pamperin, the agency’s deputy undersecretary for disability assistance, based in Washington.

But he doesn’t believe it is necessary to assign a code to every disability, saying “our ratings schedule is flexible enough to evaluate any recognized condition.”

Most patients refer to the condition by its former name — reflex sympathetic dystrophy. It usually begins with a searing or stabbing pain that is disproportionate to the original injury and persists longer than the expected healing time. The first signs may include a hypersensitivity to touch, swelling and skin discoloration, altered temperature and abnormal sweating.

The pain ebbs and flows daily, causing anxiety when patients believe they have improved only to have it return, sometimes much later, said Dr. Timothy Lubenow, professor of anesthesiology at Rush University Medical Center.

No one is sure how many people suffer from the illness, which can be cured if caught early, Lubenow said. The Reflex Sympathetic Dystrophy Syndrome Association based in Milford, Conn., estimates there are 50,000 new American patients annually, based on Norwegian studies.

Few doctors understand it, and many don’t know how to best treat it, Lubenow said.

“It was initially ascribed to people in the Civil War who had gunshot injuries,” Lubenow said. “It is not as infrequent as one would think. … It isn’t always as readily recognized as it should be because early on it may present with relatively mild symptoms.”

Shear’s first sign of trouble began one year after he joined the Marines, when he sprained his right ankle in 1998.

His leg swelled for three months, and the pain remained long after the sprain healed, he said.

In 2001, he was diagnosed with the syndrome and got a series of injections to block the sympathetic nerves, which run along the spinal column and provide sensation to the legs. He immediately felt better. A neurologist at the Naval Medical Center in San Diego told him he was cured, he said.

His wife, Amy, said Kevin was fit and healthy when she met him in 2005 and they married a year later. The two joined a gym, took up ballroom dancing and had a son, Lincoln. Kevin Shear started a business, teaching guitar to more than 20 students.

Then one day in September 2009, the pain returned with a vengeance.

Shear sought help at the North Chicago VA Medical Center but said he was treated so badly there that he contacted Rep. Don Manzullo, R-Ill., to complain.

North Chicago VA’s spokesman declined to comment on Shear’s case because of privacy concerns but stated: “Any eligible patient who comes to us with pain will receive medical care and will be treated regardless of the medical condition.”

Shear now travels for treatment to the Milwaukee VA hospital, where a spinal cord stimulator was implanted in his back.

His condition has improved, he said, but he cannot walk for more than 10 minutes or sit for longer than 45 minutes without severe pain. He takes a slew of medications, including painkillers and muscle relaxants, and grimaces at the touch of a blanket or brush of a hand.

His mother recently drove him to a hospital’s emergency room in Woodstock when pain overwhelmed him — a trip he has made a half-dozen times over the past year. There, doctors could do little but administer pain medication intravenously.

“It’s horrible to watch your son go downhill like this,” said his mother, Wendy Shear, who baby-sits the couple’s son at her home. “People don’t believe me. Friends don’t believe me. They say it will get better. It’s hard, especially for him. He’s very much alone.”

Shear can no longer embrace his wife, pick up his son or play his guitar. He finds solace in art, music and writing poetry.

Some people with the syndrome suffer from much less pain and can hold jobs.

But if left untreated for too long, the nerve damage can spread to other parts of the body, said Air Force reservist Col. Doug Strand, 51, of Hampton, Va. He said he developed the syndrome after injuring his left leg in 2008, and now copes with problems affecting his lungs.

In October, Strand testified in Washington before a committee that is revamping the veterans disability-rating system. If the pain syndrome were assigned its own code, some veterans could see their monthly disability pay increase by hundreds of dollars, he said.

“You cannot survive on $300 per month,” Strand said. “That is what happens with so many veterans. They say what do I do now? I can’t stand, I can’t walk. I can’t work. …”

After living daily with pain, many patients experience depression and undergo personality changes, experts said. What exacerbates the problem is that people who aren’t familiar with the syndrome don’t understand its debilitating effects.

Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, started a Web page devoted specifically to veterans after hearing complaints from returning soldiers.

“I always laugh when they say, ‘It’s in your head,'” Broatch said. “I say, ‘Damn right.'”

 

 

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Digital Tylenol: Microchip Embedded Into Spine Stops Chronic Pain

Digital Tylenol: Microchip Embedded Into Spine Stops Chronic Pain

Researchers and designers at the National ICT Australia in Sydney have constructed a smart chip that,when embedded in the spine, intercepts and blocks pain messages to the brain.

The chip is housed in a biocompatible casing that is smaller than the head of a match. In turn, the chip is wired to a larger implanted device containing a battery, which charges wirelessly from an outside source, and a computer processor.

The chip is embedded to the spine, or another area between the brain and source of pain. The chip can measure the properties of signals and pick out the ones that are carrying pain to the nerve center. When the chip detects a pain signal headed towards the brain, it shoots out a 10-volt electric pulse that blocks the pain signal.

The device is designed for those with serious or chronic back or leg pain, however, it technically can be used for all kinds of pains throughout the body.

National ICT Australia

[via Popular Science]

 

 

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Scans prove that acupuncture induces clear metabolic brain changes that eliminate pain

Scans prove that acupuncture induces clear metabolic brain changes that eliminate pain
(NaturalNews) New research adds more evidence proving that acupuncture is effective at reducing and eliminating pain. Presented at the annual meeting of the Radiological Society of North America (RSNA), the new findings include functional magnetic resonance imaging (fMRI) scans that clearly show a positive change in the metabolic activity of patients’ brains receiving acupuncture treatment.

“Functional MRI gives us the opportunity to directly observe areas of the brain that are activated during pain perception and see the variances that occur with acupuncture,” explained lead researcher Nina Theysohn, MD, from the Department of Diagnostic and Interventional Radiology and Neuroradiology at University Hospital in Essen, Germany. “Activation of brain areas involved in pain perception was significantly reduced or modulated under acupuncture.”

Eighteen volunteers agreed to participate in the study, and all were observed using fMRI technology. Researchers applied electrical pain stimuli to the participants’ left ankles and observed their brain activity both with and without acupuncture treatment. The team found that the pain activation centers in the participants’ brains became less active and even deactivated in the presence of acupuncture treatment.

The findings also challenge some notions that acupuncture works primarily as a placebo. While certain brain responses to acupuncture indicate facets of a placebo response, others clearly highlight specific mechanical activities in the brain that demonstrably reduce pain symptoms.

“Acupuncture is supposed to act through at least two mechanisms — nonspecific expectancy-based effects and specific modulation of the incoming pain signal,” said Theysohn. “Our findings support that both these nonspecific and specific mechanisms exist, suggesting that acupuncture can help relieve pain.”

Acupuncture has also been found to help improve fertility, increase heart function, and assist in helping people sleep.

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Experts find brain enzyme that makes pain last

Experts find brain enzyme that makes pain last

Thu Dec 2, 2:25 pm ET

SINGAPORE (Reuters) – Researchers working on mice have found an enzyme in the brain that appears to make pain last after nerve injury and they hope to use it as a new target to treat chronic pain in people.

In a paper published in Science magazine Friday, the scientists in Canada and South Korea said they managed to alleviate pain after blocking the enzyme.

“It provides us with basic understanding of the brain mechanism for chronic pain,” lead author Min Zhuo, a physiology professor at the University of Toronto, wrote in an email.

“It not only provides a new possibility to design new pain medicine, but it also helps us to understand why many drugs fail to control chronic pain.”

Although painkillers have existed for long periods of time,

management of chronic pain in hospitals, and for conditions like cancer and end-of-life palliative care, is far from adequate in many places.

Zhuo and colleagues found raised levels of the enzyme “protein kinase M zeta” in a region of the brain called the anterior cingulate cortex of the injured mice.

To confirm the enzyme’s function, they knocked out a gene in another group of mice which they believed was responsible for triggering the production of the enzyme.

They subsequently found that those mice experienced less or no chronic pain at all after nerve injury.

“The knockout mice without this enzyme may experience less or no chronic pain,” Zhuo wrote.

Zhuo and his team hope their work will help in the design of a new class of drugs that blocks this enzyme.

“Many painkillers do not work for chronic pain, especially neuropathic pain. There is great need for new drugs that can effectively control chronic pain,” Zhuo wrote.

(Reporting by Tan Ee Lyn: Editing by Ron Popeski)

 

 

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Books: RSD in Me! is now available on Amazon and for Kindle

Books: RSD in Me! is now available on Amazon and for Kindle

Pain Patient Uses Her Story To Teach And Motivate Patients

What happens when a minor accident changes your life forever, you are receiving unnecessary medical procedures and trying to hold your life together as medical bills pile up with no end in sight? Barby Ingle answers these questions and more in RSD in Me!

RSD in Me! (318pp, $14.50), covers aspects of chronic pain and Reflex Sympathetic Dystrophy Syndrome (RSD/CRPS) including definition, causes, tips on dealing with health-care professionals, caretaker information, emotional aspects of dealing with chronic pain, and tips on coping with the pain.

Author Barby Ingle, wrote this book based on her experiences in dealing with chronic pain and the health-care system after a disabling accident. Barby holds a degree in Social Psychology in 1994 from George Mason University and was head coach at a PAC-10 university and business owner of a successful cheer-leading company until a 2002 car accident.

This book has been over 6 years in the making. It is written with a pain patient’s perspective. This book has already touched the lives of many patients and their families.

Barby now is the Executive Director of the Power of Pain Foundation, A 501(C )(3) charity is donating the proceeds raised with the sale of the book to the foundation to cover patient grants for durable medical equipment.

Contact Info:
Barby Ingle
38556 N. Dave Street
Queen Creek, AZ 85240
480-882-1342
barby@powerofpain.com
www.rsdinme.com

 

 

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Press Release: ‘Pacemaker for Pain’ — Just One Option Heralded as Drug-Free Alternative


‘Pacemaker for Pain’ — Just One Option Heralded as Drug-Free Alternative

Coin-sized Medical Device Treats Chronic Pain

ORLANDO, Fla., Sept 20 /PRNewswire/ — The truth is – for people suffering from chronic pain there are alternative therapies to prescription medication.  Pain physicians continue to find neurostimulation an effective treatment for patients suffering with chronic pain.  This is just one option that physicians working with The Pain Truth, a campaign established to combat Florida’s increasing prescription drug addiction problem, would like the public to know is available to them.

(Logo: http://photos.prnewswire.com/prnh/20100901/FL58348LOGO )

(Logo: http://www.newscom.com/cgi-bin/prnh/20100901/FL58348LOGO )

“Many patients assume that pain relief can only come in the form of a pill, but it’s important for people to understand that there are drug-free options to obtain relief. Innovative procedures are available that bring long-lasting, pain-free results,” says Deborah Tracy, MD, president of the Florida Society of Interventional Pain Physicians, the organization behind The Pain Truth campaign.

Neurostimulation delivers low levels of electrical energy directly to nerve fibers through an implantable device.  One such device, the Eon Mini, is said to be the world’s smallest, longest lasting, rechargeable neurostimulator.

Beth McDonald, a 41-year-old from Orlando, FL spent almost two decades in a wheelchair totally debilitated by constant searing pain caused by a fall that tore her sympathetic nerve trunk out of her left ankle.  After 143 doctors, 30 major surgeries, and an addiction to prescription medicine, she decided to try another last resort therapy and received the Eon Mini device, which is sometimes referred to as a “pacemaker for pain.”

About the size of a U.S. silver dollar, the Eon Mini neurostimulator is similar in function and appearance to a cardiac pacemaker. It delivers mild electrical pulses to the spinal cord, which interrupt or mask the pain signals’ transmission to the brain.

The former national champion gymnast says she’s regained her life after nearly two decades in a wheelchair.  “I’ll tell you what it did for me,” Ms. McDonald says. “I was on fire from my waist down. The fire is out, and I can walk again.”

Stanley Golovac, MD, an interventional pain physician based in South Florida who works with The Pain Truth says, “The type of neurostimulation that might be appropriate for a patient depends on many factors, including the cause of pain, its type, and location.”  Below he shares some important facts about neurostimulation:

What it is—Neurostimulation is an “advanced” therapy that is used to relieve certain types of chronic pain. “Advanced” means that before deciding on neurostimulation, people have usually tried simpler options to relieve their pain. Neurostimulation therapy does require a minor procedure.  This procedure is most commonly performed in two separate stages—a temporary trial and a permanent procedure.

What it isn’t—Neurostimulation is not a cure for what’s causing the pain. It’s a therapy designed to mask pain by blocking pain signals before they reach the brain. Pain is then replaced with a more pleasant sensation called paresthesia.

Those interested in learning more about The Pain Truth can visit www.thepaintruth.org, or call 407-833-9202.

About the Florida Society of Interventional Pain Physicians (FSIPP)

FSIPP is a not-for-profit organization whose members promote the development and practice of safe, high quality, cost-effective interventional pain management techniques for the diagnosis and treatment of pain and related disorders. Members are advocates for the health of their patients and uphold the high principles, policies, and practices of their medical specialty. FSIPP was an integral part in getting the Prescription Drug Monitoring Legislation passed in the state.

SOURCE Florida Society of Interventional Pain Physicians

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Facing pain that won’t go away

September is National Chronic Pain Month
After camping and fishing with friends, Shana Hayes was driving back to her home in Puyallup, Wash., when her car hit ice and tumbled down a 500-foot hill. It was 1992, and she was 21. During the plummet, Shana’s right wrist was sprained and she was badly bruised, but miraculously, she escaped serious injury. What she did suffer as a result of the sprain altered her life forever.

Published September 10 2010

Facing pain that won’t go away

By: Naomi Dunavan, Grand Forks Herald

After camping and fishing with friends, Shana Hayes was driving back to her home in Puyallup, Wash., when her car hit ice and tumbled down a 500-foot hill. It was 1992, and she was 21.

During the plummet, Shana’s right wrist was sprained and she was badly bruised, but miraculously, she escaped serious injury.

What she did suffer as a result of the sprain altered her life forever.

When she awoke in the hospital, “my wrist was hurting,” Shana said. After she got home, the pain continued to progress and spread quickly through her right arm.

“Initially, my right arm atrophied and became stuck in one position,” Shana added. “I couldn’t feed myself. My mom fed me, and I couldn’t do my hair. I was in so much pain I cried on the couch.”

Through those tears and through those years of agony, which Shana rated “10” on the pain scale, “my mom and I sang, ‘Jesus loves me, this I know,’” she said. “It was a reminder that He was there for me when I was so bad off. My faith has helped me tremendously.”

Plagued by pain throughout her body, Shana saw 15 physicians over the next three years, but it wasn’t until she was referred to the University of Washington in Seattle, that she was diagnosed with reflex sympathetic dystrophy, also known as complex regional pain syndrome.

Fairly rare and affecting 1.2 million people, RSD is a chronic, painful and progressive neurological condition that affects the skin, muscles, joints and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. But many cases of RSD involve only a minor injury, such as a sprain.

Yes, such as a sprain.

Despite finally knowing the problem, nothing helped the intense pain.

“My mom cared for me all those years,” she said.

“She was so bad off,” added her mother, Colleen Hayes, “I was beside myself.”

So, in 1998, Colleen and Shana moved to Grand Forks, where Colleen had grown up and where she has family. “I was so glad to come back,” Colleen said.

“It’s nice to have family support,” Shana added. “A lot of people don’t have that.”

Speaking of support — through the American Chronic Pain Association, Shana was instrumental in starting a Chronic Pain Support Group at her church, Immanuel Lutheran, 1710 Cherry St.

“I’ve had so much support,” she said. “I want to give back to others. I want them to have support, too. I’ve had people come up to me and thank me for having the meeting. It’s been very beneficial.”

Shana and parish nurse Wendy Wilke are co-facilitators of the group that meets from 6 to 7:30 p.m. the first Thursday of each month. Anyone with chronic pain caused by anything — fibromyalgia, arthritis, back pain, migraines, etc. — is welcome to attend.

Dr. Robert Laidlaw, a Grand Forks psychologist whose practice focuses on chronic pain, will speak at the Oct. 7 meeting.

September is National Chronic Pain Month. According to information from the American Pain Foundation, the lost productive time from common pain conditions among active workers costs an estimated $61.2 billion a year. And the National Institute of Health estimates that pain costs the American public more than $100 billion per year in medical expenses and lost wages.

“Pain is becoming a major health problem,” Shana said. “You have to realize that medicine alone is not going to treat your pain. You have to take control of your life.”

Different methods of coping with pain are discussed at support group meetings. People help one another by telling what works for them. For example: practicing guided imagery, which is finding a place in your mind to take a soothing walk — perhaps along a white, sandy beach.

Shana lived in California until age 16, when her family moved to Washington state. “I loved the beach,” she said. “That’s my safe place for guided imagery.”

Or one could envision walking in the forest and listening to the rustling of fall leaves or the chirping of crickets. “Be creative and listen to the sounds around you,” Shana advised. “Or it could be something as simple as a heating pad or an ice pack. And laughter is great medicine. We have a lady in the group who jokes about wearing this ice pack. She goes to the grocery store with her ice pack. Every time we meet, we get to know where everyone is at. It helps people open up.”

Shana also has the benefit of loving pet therapy from Precious and Rocko, her buff-colored Chihuahuas. “Rocko lies next to me on the couch,” she said,

“And Precious knows when she’s in a lot of pain,” Colleen added. “She gives Shana kisses.”

After moving to Grand Forks, Shana, now 38, had a morphine pump implant for pain control. After 10 years, that had to be removed because spinal fluid was leaking into her abdomen.

For the past nine months, Shana hasn’t been able to keep food down, so in July, she had surgery for insertion of a feeding tube. The liquid supplement keeps the hunger pangs at bay, “but I miss the taste of good food,” she said.

With a walker or cane, Shana can stroll short distances. She uses an electric wheelchair for shopping. She’s now doing things she couldn’t do for years such as scrapbooking, arts and crafts and cruises.

Last December, she and her mom were on the Mexican Riviera. Now, they’re planning a January Eastern Caribbean cruise.

Shana continues to have “full-body, burning sharp-like electrical pain and aching.” But she no longer gives the pain a “10,” but rather a “4.”

She wears a Fentanyl pain patch. “I do have medications I can take on days when it’s cooler and damper,” Shana said. “As the weather changes, people get a lot worse.”

The Chronic Pain Support Group is an essential part of Shana’s life. “I love it,” she said. “I really look forward to meeting with everybody and talking. I had no life for many years. I would lie on the couch hurting and crying in pain. I couldn’t go to social events. I was pretty isolated. It affects every aspect of your life. The support group — I could never have done something like that.”

And now she can.

The Herald publishes Naomi Dunavan’s “In the Spirit” column the second Saturday of each month. Reach her at (218) 773-9521 or naomiinthespirit@aol.com. Also, see her blog at http://www.areavoices.com/inthespirit.



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